What happens after treatment for Hodgkin disease?
For many people with Hodgkin disease, treatment may remove or destroy the cancer. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about the lymphoma growing or coming back. (When cancer comes back after treatment, it is called recurrence.) This is a very common concern in people who have had cancer.
It may take a while before your fears lessen. But it might help to know that many cancer survivors have learned to live with this uncertainty and are leading full lives. Our document, Living With Uncertainty: The Fear of Cancer Recurrence, gives more detailed information on this.
For some people, the lymphoma may never go away completely. These people may get regular treatments with chemotherapy, radiation therapy, or other therapies to help keep the lymphoma in check for as long as possible. Learning to live with lymphoma as more of a chronic disease can be difficult and very stressful. It has its own type of uncertainty.
If you (or your child) have completed treatment, your doctors will still want to watch you closely. It is very important to keep all follow-up appointments. You or your child will need follow-up care for many years after treatment for Hodgkin disease.
During these visits, the doctor will ask about symptoms, do physical exams, and may order blood tests or imaging tests such as CT scans or chest x-rays. Doctor visits are usually recommended every few months for the first several years after treatment. Gradually, the length of time between visits can be increased, but even after 5 years they should be done at least yearly.
Follow-up is needed to check for cancer recurrence or spread, as well as possible side effects of certain treatments. This is the time for you to ask your health care team any questions you need answered and to discuss any concerns you might have.
If Hodgkin disease does come back at some point, further treatment will depend on what treatments you’ve had before, how long it’s been since treatment, and your health. For more information, see “Recurrent or relapsed Hodgkin disease” in the “Treatment options by stage” section. For more general information on dealing with a recurrence, you may also want to see our document, When Your Cancer Comes Back: Cancer Recurrence. You can get it by calling 1-800-227-2345.
Watching for long-term side effects
Each type of treatment for Hodgkin disease has side effects that could last for months or longer. Some side effects, like loss of fertility, may be permanent. Because so many people now live for a long time after their treatment, watching for these serious side effects is very important.
Second cancers: One of the most serious side effects of Hodgkin disease treatment is developing a second cancer later on. For example, acute myelogenous leukemia (AML) can develop in a small portion of patients after receiving certain types of treatment. This usually occurs in the first few years after treatment and is seen more often in older people.
This might be less likely with current chemo drug combinations like ABVD than with some combinations used more often in the past, such as the MOPP regimen, but there is still a small risk.
Radiation may also add to this risk. Although radiation alone does not increase the risk for leukemia much, it can raise the risk of other forms of cancer in the part of the body that received the radiation.
Women who receive chest radiation before they are 30 years old have a much higher risk of breast cancer. They should be especially careful about following American Cancer Society recommendations for early detection of breast cancer and should talk to their doctor about starting screening at an early age.
Both men and women receiving chest radiation have a higher chance of developing lung cancer, mesothelioma (a cancer of the lining of the lungs), and thyroid cancer. The risk of lung cancer is much higher in smokers, so not smoking is especially important among survivors of Hodgkin disease. Follow-up physical exams, blood tests for thyroid problems, and spiral CT scans or x-rays of the chest as suggested by your doctor may be helpful.
Cancers of muscle or bone, called sarcomas, can also develop in areas that get radiation. Likewise, digestive tract cancers such as colon cancer are also more likely.
Another type of cancer, non-Hodgkin lymphoma, develops in a small number of patients with Hodgkin disease. It is thought that this risk is due mostly to the disease itself and not the treatment.
Fertility issues: A possible long-term effect of chemotherapy and radiation therapy, especially in younger patients, is reduced or lost fertility. For example, some chemotherapy drugs might affect a male’s ability to make sperm, which might be temporary or permanent. If the patient is old enough and is going to get drugs that can affect fertility, sperm banking should be considered before chemotherapy is started.
Likewise, women may stop ovulating and menstruating with chemotherapy. This may or may not return to normal. Radiation to the lower abdomen can cause infertility unless the ovaries are surgically moved outside the radiation field beforehand. Moving the ovaries does not affect cure rates because Hodgkin disease almost never spreads to the ovaries.
Infections: For unknown reasons, the immune system of people with Hodgkin disease does not work properly. Treatments such as radiation, chemotherapy, and surgery to remove the spleen (splenectomy) can add to this problem. Splenectomy was once common but is now rare for people with Hodgkin disease. Patients who have their spleen removed should be immunized against certain bacteria.
All people who have had Hodgkin disease should keep up with their flu shots. Keeping up with vaccinations and careful, prompt treatment of infections are very important.
Thyroid problems: Radiation therapy to the chest or neck to treat Hodgkin disease might affect the thyroid gland, causing it to make less thyroid hormone. People with this condition, known as hypothyroidism, may need to take thyroid medicine. People who got radiation to the neck or upper chest should have their thyroid function checked with blood tests at least yearly.
Heart disease and strokes: People who have had radiation to the chest have a higher risk of heart disease and heart attacks. This has become less of a problem with more modern radiation techniques, but it is important to not smoke and maintain a healthy diet to help avoid this problem. Some chemotherapy drugs such as doxorubicin (Adriamycin) and mitoxantrone can also cause heart damage. Your doctor may advise you to have tests to check your heart function several years after your treatment.
Radiation to the neck increases the chance of stroke because it can damage the blood vessels in the neck that supply the brain. Smoking and high blood pressure also increase the risk of stroke. Once again it is important to avoid smoking. It is also important to have regular check-ups with your doctor and have any high blood pressure treated.
Lung damage: The chemotherapy drug bleomycin can damage the lungs, as can radiation therapy to the chest. This can lead to problems such as shortness of breath, which might not show up until years after treatment. Smoking can also seriously damage the lungs, so it is important that people who have had these treatments do not smoke.
Special concerns in childhood Hodgkin disease survivors
Just as the treatment of childhood Hodgkin disease requires a very specialized approach, so does follow-up and monitoring for late effects of treatment. Careful follow-up after treatment is very important.
Along with physical side effects (including those listed above), survivors of childhood cancer may have emotional or psychological issues that need to be addressed. They also may have some problems with normal functioning and school work. These can often be addressed with support and encouragement. Doctors and other members of the health care team can also often recommend special support programs and services to help children after cancer treatment.
To help increase awareness of late effects and improve follow-up care of childhood cancer survivors throughout their lives, the Children’s Oncology Group (COG) has developed long-term follow-up guidelines for survivors of childhood cancers. These guidelines can help you know what to watch for, what types of health screening should be done, and how late effects may be treated.
It is very important to discuss possible long-term complications with your child’s health care team, and to make sure there is a plan in place to watch for these problems and treat them, if needed. To learn more, ask your child’s doctors about the COG survivor guidelines. You can also download them for free on the COG Web site: www.survivorshipguidelines.org. The guidelines are written for health care professionals. Patient versions of some of the guidelines available (as “Health Links”) on the site as well, but we urge you to review them with a doctor.
For more about some of the possible long-term effects of treatment, see our document called Children Diagnosed With Cancer: Late Effects of Cancer Treatment.
Seeing a new doctor
At some point after treatment, you (or your child) may be seeing a new doctor who does not know anything about your (child’s) medical history. It is important that you be able to give the new doctor the details of the diagnosis and treatment. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. Make sure you have this information handy:
- A copy of your pathology report(s) from any biopsies or surgeries
- Copies of imaging tests (CT or MRI scans, etc.), which can usually be stored on a CD, DVD, etc.
- If you had surgery, a copy of your operative report(s)
- If you stayed in the hospital, a copy of the discharge summary that doctors prepare when patients are sent home
- If you had chemotherapy or monoclonal antibodies, a list of the drugs, drug doses, and when you took them
- If you had radiation therapy, a summary of the type and dose of radiation and when and where it was given
It is also important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.
Last Medical Review: 12/10/2012
Last Revised: 02/07/2014